Biography

Since completing her residency training under the mentorship of Drs. Robert Joynt and Berch Griggs, she has focused her career on the neuromuscular disorders of childhood.  For the past two decades, Dr. Susan Iannaccone has worked on management protocols and outcome measures for the most common disorders: spinal muscular atrophy (SMA) and Duchenne muscular dystrophy (DMD). She was the PI and leader for an NIH sponsored clinical trials group, AmSMART from 2000 through 2008. With NIH funding, the group established for the first time reliability and validity for outcome measures in the young spinal muscular atrophy (SMA) population. Current trials in pediatric SMA use many of the principles they established in AmSMART. She was a member of the Outcomes Committee for the International Coordinating Committee for SMA that completed Rasch analysis for motor function outcomes in SMA. This international project made great progress toward validating a single tool to be used as motor function outcome in this population. Currently, she is site-PI for more than half a dozen clinical trials in SMA and DMD.

Dr. Iannaccone is Co-Investigator for the UT Southwestern NeuroNEXT grant from NINDS, and Associate Director for the UT Southwestern Wellstone Muscular Dystrophy Center, NIH funded.  She is site PI for the MDA sponsored DMD Research Network. Dallas is one of 5 sites funded for 5 years to perform clinical trials in young boys with DMD. She was Co-chair of the panel to develop Common Data Elements for Pediatric Neuromuscular disease, a project of the NINDS. She was a member of the panels that developed CDEs for congenital muscular dystrophy and for SMA. She was also an invited member of a Steering Committee to govern the project for conducting IND enabling toxicology studies for scAAV9-SMN gene therapy developed at Nationwide Children’s hospital in Columbus, Ohio. The IP is now in clinical trials sponsored by AveXis, and she is site PI for UTSW. She has worked closely over many years with several patient advocacy/volunteer groups including the Muscular Dystrophy Association, and Cure SMA, including but not limited to, the International Standard of Care Committee for Congenital Muscular Dystrophies and the DMD Study Group. She has served on research grant review committees, as well as several planning committees and panels, for them and the NIH.

She was Director of Pediatric Neurology from 2004 to 2016, including duties for training residents and mentoring faculty. Dr. Iannaccone has trained/mentored more than 20 pediatric neuromuscular fellows and medical students, many of whom are currently in academic pediatric neurology positions.  She holds 4 pediatric neuromuscular clinics per week, all of which are official MDA sponsored clinics. Nearly 100% of all children diagnosed with DMD/SMA in north Texas are referred to her team either by their primary care provider, another child neurologist, or by parents who read about their program on the internet. Most of the time, they request information about clinical trials at the first visit and invariably indicate that they are anxious to participate.

Education

Medical School
State University of New York - Upstate (1969)
Internship
State University of New York Upstate Medical University (1970), Pediatrics
Residency
State University of New York Upstate Medical University (1971), Pediatrics
Residency
Washington University/St. Louis Childrens Hospital (1972), Pediatrics
Fellowship
Strong Mem Hosp Univ of Rochester (1975), Neurology

Research Interest

  • Duchenne Muscular Dystrophy
  • Neuromuscular diseases
  • Spinal Muscular Atrophy

Publications

Featured Publications LegendFeatured Publications

Recruitment & retention program for the NeuroNEXT SMA Biomarker Study: Super Babies for SMA!
Bartlett A, Kolb SJ, Kingsley A, Swoboda KJ, Reyna SP, Sakonju A, Darras BT, Shell R, Kuntz N, Castro D, Iannaccone ST, Parsons J, Connolly AM, Chiriboga CA, McDonald C, Burnette WB, Werner K, Thangarajh M, Shieh PB, Finanger E, Coffey CS, Yankey JW, Cudkowicz ME, McGovern MM, McNeil DE, Arnold WD, Kissel JT Contemp Clin Trials Commun 2018 Sep 11 113-119
Placebo-controlled Phase 2 Trial of Drisapersen for Duchenne Muscular Dystrophy.
McDonald CM, Wong B, Flanigan KM, Wilson R, de Kimpe S, Lourbakos A, Lin Z, Campion G, Ann Clin Transl Neurol 2018 Aug 5 8 913-926
Congenital titinopathy: Comprehensive characterisation and pathogenic insights.
Oates EC, Jones KJ, Donkervoort S, Charlton A, Brammah S, Smith JE, Ware JS, Yau KS, Swanson LC, Whiffin N, Peduto AJ, Bournazos A, Waddell LB, Farrar MA, Sampaio HA, Teoh HL, Lamont PJ, Mowat D, Fitzsimons RB, Corbett AJ, Ryan MM, O'Grady GL, Sandaradura SA, Ghaoui R, Joshi HB, Marshall JL, Nolan MA, Kaur S, Punetha J, Töpf A, Harris E, Bakshi M, Genetti CA, Marttila M, Werlauff U, Streichenberger N, Pestronk A, Mazanti I, Pinner JR, Vuillerot C, Grosmann C, Camacho A, Mohassel P, Leach ME, Foley AR, Bharucha-Goebel D, Collins J, Connolly AM, Gilbreath HR, Iannaccone ST, Castro D, Cummings BB, Webster RI, Lazaro L, Vissing J, Coppens S, Deconinck N, Luk HM, Thomas NH, Foulds NC, Illingworth MA, Ellard S, McLean CA, Phadke R, Ravenscroft G, Witting N, Hackman P, Richard I, Cooper ST, Kamsteeg EJ, Hoffman EP, Bushby K, Straub V, Udd B, Ferreiro A, North KN, Clarke NF, Lek M, Beggs AH, Bönnemann CG, MacArthur DG, Granzier H, Davis MR, Laing NG Ann. Neurol. 2018 Apr
Nusinersen versus Sham Control in Later-Onset Spinal Muscular Atrophy.
Mercuri E, Darras BT, Chiriboga CA, Day JW, Campbell C, Connolly AM, Iannaccone ST, Kirschner J, Kuntz NL, Saito K, Shieh PB, Tulinius M, Mazzone ES, Montes J, Bishop KM, Yang Q, Foster R, Gheuens S, Bennett CF, Farwell W, Schneider E, De Vivo DC, Finkel RS N. Engl. J. Med. 2018 02 378 7 625-635
NINDS Common Data Elements for Congenital Muscular Dystrophy Clinical Research: A National Institute for Neurological Disorders and Stroke Project.
Lawlor MW, Iannaccone ST, Mathews K, Muntoni F, Alai-Hansen S, Odenkirchen JC, S Feldman R J Neuromuscul Dis 2018 5 1 75-84
Natural History of Infantile-Onset Spinal Muscular Atrophy.
Kolb SJ, Coffey CS, Yankey JW, Krosschell K, Arnold WD, Rutkove SB, Swoboda KJ, Reyna SP, Sakonju A, Darras BT, Shell R, Kuntz N, Castro D, Parsons J, Connolly AM, Chiriboga CA, McDonald C, Burnette WB, Werner K, Thangarajh M, Shieh PB, Finanger E, Cudkowicz ME, McGovern MM, McNeil DE, Finkel R, Iannaccone ST, Kaye E, Kingsley A, Renusch SR, McGovern VL, Wang X, Zaworski PG, Prior TW, Burghes AHM, Bartlett A, Kissel JT Ann. Neurol. 2017 Nov
Diagnosis and management of spinal muscular atrophy: Part 2: Pulmonary and acute care; medications, supplements and immunizations; other organ systems; and ethics.
Finkel RS, Mercuri E, Meyer OH, Simonds AK, Schroth MK, Graham RJ, Kirschner J, Iannaccone ST, Crawford TO, Woods S, Muntoni F, Wirth B, Montes J, Main M, Mazzone ES, Vitale M, Snyder B, Quijano-Roy S, Bertini E, Davis RH, Qian Y, Sejersen T Neuromuscul. Disord. 2017 Nov
Diagnosis and management of spinal muscular atrophy: Part 1: Recommendations for diagnosis, rehabilitation, orthopedic and nutritional care.
Mercuri E, Finkel RS, Muntoni F, Wirth B, Montes J, Main M, Mazzone ES, Vitale M, Snyder B, Quijano-Roy S, Bertini E, Davis RH, Meyer OH, Simonds AK, Schroth MK, Graham RJ, Kirschner J, Iannaccone ST, Crawford TO, Woods S, Qian Y, Sejersen T Neuromuscul. Disord. 2017 Nov

Books

Featured Books Legend Featured Books

Honors & Awards

  • Best Pediatric Specialists
    D Magazine (2010-2018)
  • Special Award for Mentoring
    Pediatric Neurology Residents (2010)
  • Member, Executive Council
    American Neurological Association (2008)
  • Texas Super Doctors
    Texas Monthly (2008-2018)
  • Chair, Section on Child Neurology
    American Academy of Neurology (2007-2009)
  • Neurology Alumni Award
    University of Rochester Department of Neurology (2000)

Professional Associations/Affiliations

  • Academy of Pediatrics
  • American Academy of Neurology
  • American Association for the Advancement of Science
  • International Child Neurology Association
  • Muscular Dystrophy Association of America
  • New York Academy of Science
  • Southern Society for Pediatric Research
  • The Society for Pediatric Research